Feelings

I don't want to make it sound as though I spend all of my time thoroughly depressed, so please don't take this post that way.  It's just that I was reading a book before bed last night and came across this quote that I feel could sometimes describe me:

"The worst type of crying wasn't the kind everyone could see - the wailing on street corners, the tearing at clothes. No, the worst kind happened when your soul wept and no matter what you did, there was no way to comfort it.  A section withered and became a scar on the part of your soul that survived."

I'm too embarrassed to provide the book and author as when I downloaded this particular book on my kindle, I did not notice that it said it was a Harlequin teen book.  It was part of the kindle daily deals and the plot sounded interesting.  It's actually a pretty darn good book but I don't think I'll put it out there right now.

I'm not much of a crier.  I rarely show the emotions that I am feeling, in fact I probably work extra hard to cover them up- awkwardly laughing after talking about anything that truly upsets me.  Even when I am feeling sad and crying on the inside, chances are you will ask me how I'm doing and my answer will be something neutral like "hanging in there" or "doing ok."  I won't out and out lie and say everything is great but there's something really uncomfortable about pouring it all out when someone asks how you are.  I don't think that's what most people are really looking for anyway!

This quote also made me think about how differently people react to difficult situations.  Abby and I tend to be more stoic and in control when a crisis happens.  Whereas Emma will scream, cry out, and lash out at any one around her.  For the longest time, I've thought Emma is the one who is reacting somewhat inappropriately but now realize that holding it all in isn't really all that healthy either.  Maybe that's why my blood pressure is high?

I know I'm not going to change and start pouring my heart out to everyone who asks but maybe just writing about it is all I need right now to feel even slightly better and avoid that feeling of awkwardness that comes with the face to face talks.

Frustration Mounting

I'll start with the good news.  The MRI showed that there has been no new growth.  I guess up until the last year or so, that was exactly what we hoped for every time we went in - a stable MRI.  Now, unfortunately (and even the neurooncologist felt this way), a stable MRI means that there is not something going on that we can treat.  I continue to try to feel blessed that nothing new is going on in there but it would be nice if there was a way to improve Tim's overall quality of life.

It has been really difficult around our house of late.  It seemed to get to Abby first and I felt badly that she was going through such an angry stage and that there was nothing I could do about it.  Now I realize it's just the frustration with all we can't change as I find myself going through quite the angry stage now as well.  Tim's self-hitting and self-talking has gotten so out of control that the only way to get a break from it is to go off to another room.  Which means that he has the main living area of our house (family room and kitchen) to himself most of the time.  As I sit here in my bedroom to once again get away from the self-hitting noise, I can still hear it downstairs and it literally is like nails on a chalkboard for me.

For a long time, I was able to tell myself "It's not his fault.  He never would have wanted to be this way."  Lately that doesn't seem to be working.  It's like there's only so much a person can take and then you start going over the edge!

We have been driving into MGH once a week for speech and language services for a couple of weeks now.  The new organizational systems we have been putting in place do seem to be helping with keeping him more independent and productive so that has at least been a positive.    We are utilizing an organizer with a to-do list as well as ipad alarms as reminders.  Unfortunately his first instinct is still to just turn the alarm off and continue to watch tv, but with a verbal reminder, he will get up and do his job.

On Monday, we went in to see the neuropsychiatrist.  He would like to try a beta blocker with Tim that is supposed to help with restlessness and impulsive behaviors.  He needs to check with Tim's heart doctor first to be sure it is a safe option for him.  I can't even start to get my hopes up at this point that it will help with these behaviors but I truly feel like I am losing my mind!  

It certainly isn't helping any that I was just about over one cold and managed to catch another one.  Feeling pretty lousy healthwise at the moment.  But also feeling a lack of laughter and fun in my life.  It seems like I'm just plodding through each day always waiting for something good to happen.  I don't know what I would do without the kids here to bring some sunshine into my life!  I just wish they didn't have to go through all of this!